1. APPROACHES TO THE STUDY OF WELL SIBLINGS
Much of the research on well siblings to date has been from what Drotar and Crawford (1985: 360) call âa deficit or disease perspective.â In these studies investigators âhave searched for evidence of psychopathology or major dysfunction as the primary impact of catastrophic disease on individuals and familiesâ (Carpenter and Sahler 1991: 194). To accomplish this they often turned to standardized instruments thought to measure social and emotional adjustment in children. These measures, âfor the most part, were normed in psychiatric populationsâ (Carpenter and Sahler 1991: 194). They then analyzed the results in terms of variables that had proven meaningful in other studies of social and emotional adjustment in clinical populations (Delisi 1986).
The types of studies these investigators conducted reflected their motivation, background, and training. These researchers were interested in improving the lives of well siblings. They wanted their work to be of some use in clinical practice (a value I share). Some were in clinical practice and all had some clinical background or training. Given their orientation and background, their approach to the question is not surprising. In clinical work one prefers to rely on controlled studies with large samples, with clearly defined and delimited predictors of outcomes, and to make recommendations based on those findings.
This literature, however, is marked by contradictory findings and divergent interpretations of those findings. A substantial portion of the literature evaluates negative effects on the well siblings. Researchers report a panoply of problems: psychosomatic disorders,2 somatic disorders,3 accident proneness,4 behavior disorders,5 behavior problems,6 hyperactivity,7 irritability,8 bedwetting and soiling,9 regression,10 stealing,11 fire starting,12 aggressiveness,13 generalized hostility and rebelliousness,14 poor social adjustment,15 laziness,16 withdrawal,17 poor school performance,18 learning disabilities and learning problems,19 low self-esteem20 and feelings of being socially stigmatized,21 social isolation,22 rejection,23 anxiety,24 depression,25 anger,26 resentment,27 jealousy,28 guilt,29 shame,30 fear for their own health,31 and negative body image.32
At the other end of the spectrum are those who find that chronic, life-threatening illnesses do not necessarily have negative effects on well siblings and may actually have positive ones. For example, in a study of the well siblings of children with cancer, Kramer (1984: 49) found that âthe effects of the leukemic illness on the well siblings were not all negative. The same experiences that engendered the negative feelings of isolation, frustration, anxiety and resentment also brought about positive and adaptive responses in the healthy siblings and their families.â In a similar vein, Harder and Bowditch (1982: 118) in their study of the well siblings of children with CF noted that the âoccurrence of cystic fibrosis apparently has helped some siblings to be less self centered; . . . having the disease in the family improved their ability to empathize and communicate with the ill and to cope with difficult circumstances.â Some investigators have even gone so far as to characterize the presence of a seriously ill child in the family as an opportunity for the well sibling. Gayton, Friedman, Tavormina, and Tucker (1977: 893) called attention to researchers like Pless and Pinkerton, who suggested that âhandicapping illnesses do not invariably result in maladjustment and that on the contrary in some instances may provide opportunities for the growth of personality.â Iles (1979) found the well siblings of children with cancer became âmore compassionate, tolerant, empathetic, and appreciative of their own healthâ (Kupst 1986: 176). In her survey of the literature on the well siblings of children with cancer, Walker (1990: 358) cited studies with evidence for such positive effects as: âincreased ability for empathy and sensitivity, enhanced personal maturation and self concept, an increase in family cohesion, and a perceived ability to cope with negative changes.â
There is also a midrange of studies which reject both positive and negative labeling (Gayton, Friedman, Tavormina, and Tucker 1977: 888; Drotar and Crawford 1985: 355; Tritt and Esses 1988: 218). Some would like to have investigators âdefine competencies rather than deficitsâ (Carpenter and Sahler 1991: 194). Some of these researchers and clinicians find the well siblings to be âwithin the normal range of social competenceâ (OâBrien 1987: 5075-B), ânot any less well adjusted than controlsâ (Binks 1982: 43), and not deviant or disturbed in the way that many of the studies would suggest (Switzer 1984: 1926-B; Gayton, Friedman, Tavormina, and Tucker 1977: 888). Kupst (1986: 84) and others find that âwhile the experience of serious illness in a brother or sister may present several upsetting and uncomfortable situations for a child, most of them appear to be able to cope with it, especially over time.â Others, like Carpenter and Sahler (1990: 202), take the position that âthese children do not appear to be at risk for major psychological disturbance. On the other hand, by clinical experience, minor dysfunction as an indicator of distress occurs frequently.â
Several of these researchers urge their colleagues to examine particular domains of psychological function and social adjustment before concluding that chronic illness has a negative impact on well siblings. For example, Drotar, Crawford, and Bush (1984: 109) argue that âthe general mental health of siblings is not necessarily impaired, but their social adaptation may be vulnerable.â Breslau and her colleagues put a finer point on this. They found that âsiblings of disabled children [study included children with cystic fibrosis, cerebral palsy, myelodysplasia, and multiple handicaps] did not manifest higher rates of severe psychologic impairment or greater overall symptomatology when compared to control subjects. [However] on two scales measuring interpersonal aggression with peers and within the school, siblings of disabled children scored significantly higher indicating greater pathology in these behavioral domainsâ (Breslau, Weitzman, and Messenger 1981: 350). Similarly, Cadman, Boyle, and Offord (1988: 119) found âlittle increased risk for psychiatric disorders or social maladjustment. The two exceptions appear to be increased risk for emotional internalizing disorder, including depression, anxiety or obsessive-compulsive thoughts and actions as well as difficulty getting along with peers.â
Evaluating the results of studies of well siblings is no easy task. Most often one is not comparing equivalent pieces of work. There is a tremendous range of variation in: theoretical perspectives or orientations (e.g., family systems, coping, crisis, and stress),33 study populations (e.g., disease[s], severity), period in the illness (e.g., time of diagnosis, physical deterioration, quiescence or terminal phase), type of study (e.g., research, clinical, quantitative, qualitative), sample size and criteria (e.g., age, sex, socioeconomic background), informants (e.g., well siblings, parents, teachers), assessment approaches and instruments (e.g., observational accounts, psychological scales, behavioral checklists), terminology, and reported findings. And this is just to name but a few of the differences. It is not surprising that the studies often appear to contradict one another.
Even within the same disease population researchersâ findings vary. Consider these three examples from studies of the well siblings of children with CF. Allan, Townley, and Phelan (1974) found numerous problems in the well siblings. Gayton, Friedman, Tavormina, and Tucker (1977) did not. Allan and his colleagues worked in what Brett would def...